Leaving a Legacy: Allied Health Professionals' Perceptions of Fertility Preservation and Posthumous Reproduction for Adolescent and Young Adults with a Poor Cancer Prognosis.
Leaving a Legacy: Allied Health Professionals' Perceptions of Fertility Preservation and Posthumous Reproduction for Adolescent and Young Adults with a Poor Cancer Prognosis.
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留下遗产：联合卫生专业人员对癌症预后不良的青少年和年轻人的生育力保存和死后生殖的看法。
DOI：
10.1089/jayao.2022.0184
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发表时间：
2024
影响因子：
2
通讯作者：
Quinn,GwendolynP
中科院分区：
文献类型：
--
作者：
Barrett,Francesca;Sampson,Amani;Campo-Engelstein,Lisa;Caplan,Arthur;Vadaparampil,SusanT;Quinn,GwendolynP
目的：探讨专职医疗人员（AHPs）对癌症预后不良的青少年和年轻人（AYA，年龄15-39岁）的死后辅助生殖（PAR）的经验和看法。方法：我们对2021年5月至8月参加肿瘤生育专业人员丰富沟通技能（ECHO）培训计划的AHPs进行了基于视频的90分钟焦点小组（FG）的定性分析。主持人主持的讨论由与癌症预后不良的AYA之间PAR的讨论和利用相关的经验主题指导。采用常数比较法进行主题分析。出现了三个主题：（1）PAR作为姑息治疗：为他们的伴侣、兄弟姐妹和父母保留患者的遗产;（2）平衡患者时间敏感需求的伦理和法律的考虑;（3）AHPs在这一人群中导航复杂的护理动态时遇到的障碍。次主题包括强调病人的自主权，多学科的方法来咨询，生育讨论的早期启动持续随着时间的推移，记录生殖的愿望，并关注家庭和后代后patient death.Conclusions：AHPs希望及时的谈话生殖遗产和计划生育。在缺乏制度政策、培训和资源的情况下，AHPs强调感觉自己没有能力驾驭患者、家属和同事之间的复杂动态。制定透明的机构政策，实施多学科护理团队，并与伦理委员会进行监督，可以改善为癌症预后不良的AYA及其家人提供生殖保健和/或临终关怀。
Purpose:To explore Allied Health Professionals' (AHPs) experiences with and perceptions of posthumous assisted reproduction (PAR) among adolescent and young adults (AYA, ages 15–39) with a poor cancer prognosis.Methods:We conducted a qualitative analysis of video-based 90-minute focus groups (FGs) of AHPs who participated in the Enriching Communication Skills for Health Professionals in Oncofertility (ECHO) training program from May to August 2021. Moderator-facilitated discussions were guided by topics related to experiences around discussions and utilization of PAR among AYA with a poor cancer prognosis. Thematic analysis was conducted using the constant comparison method.Results:Forty-three AHPs participated in one of seven FGs. Three themes emerged: (1) PAR as palliative care: preserving patient's legacy for their partner, siblings, and parents; (2) ethical and legal considerations for balancing patient's time-sensitive needs; and (3) barriers AHPs encounter navigating complex dynamics of care in this population. Subthemes included an emphasis on patient autonomy, a multidisciplinary approach to counseling, early initiation of fertility discussions continuing over time, documenting reproductive desires, and concerns for family and offspring after patient death.Conclusions:AHPs desired timely conversations on reproductive legacy and family planning. In the absence of institutional policies, training, and resources, AHPs emphasized feeling ill-equipped to navigate the complex dynamics between patients, families, and colleagues. The development of transparent institutional policies, implementation of multidisciplinary care teams, and oversight with ethics committees may improve the provision of reproductive health care and/or end-of-life care for AYA with a poor cancer prognosis and their families.